title: Medical test results do not tell the whole story: health-related quality of life offers a patient perspective on outcomes.
abstract: Children born today with congenital heart disease (CHD) are likely to reach adulthood, even those with complex disease. As survival rates have increased, attention has focused on the longer-term morbidity associated with CHD and its treatment, but this has largely addressed the physical and physiological outcomes rather than psychosocial morbidity and health-related quality of life (QoL). The purpose of this article is to outline the arguments in favor of routine evaluation of health-related QoL, describe how such measurements might be used, and the barriers and challenges associated with the collection of the data. Finally, a strategy is suggested for the routine collection and use of health-related QoL data with children and adolescents with CHD.
authors.affiliation: Centre for Nursing and Allied Health Research, Great Ormond Street Hospital for Children NHS Trust, London, UK.
authors.forename: Jo
authors.initials: J
authors.lastname: Wray
authors.forename: Kate
authors.initials: K
authors.lastname: Brown
authors.forename: Bradley S
authors.initials: BS
authors.lastname: Marino
authors.forename: Rodney
authors.initials: R
authors.lastname: Franklin
keywords: congenital heart disease (CHD); morbidity); outcomes (includes mortality; pediatric; quality of life